Monday, February 28, 2011

I can't believe its been a week since Dad's surgery already. He appears to be doing just fine, with no ill effects from the procedure, unlike the last time. I am supremely grateful for this-no more trips to the ER because of excessive pain. I'm guessing that the caregiver is actually using all of the pain meds as directed by me.

I was surprised, however, at how I felt after the procedure. My book, of course, has not yet come out but a major part of my story has been how it felt to take care of Dad and deal with his medical issues when he never lifted a finger to help me with mine. As I explained, Dad is a Christian Scientist, and he does not believe in the efficacy of medical intervention, nor does he believe that a body which is a reflection of God, can truly get sick. I don't subscribe to these beliefs, but I was raised with them, and as a child, was not encouraged to show illness or report symptoms, something that has left a lasting legacy in my body. When I came down with a serious chronic condition as a young woman, I had no idea how to take care of it and didn't seek medical help until a lot of damage had been done to my body. During this time, I lived with Dad, and he, because of his beliefs or for other reasons, never acted to help me, even though I was seriously ill.

In my book, I cover how hard it was to step in and take over organizing Dad's life, and my feelings that he was bowing out of life and leaving me to clean up the mess. But I also discuss how very hard it was and is to help him deal with the medical problem and go to the doctor. In essence, it makes me angry on levels I'm not always aware of to have to care for a parent who didn't care for me. The story is bigger than this, of course, and I do love my father and want to care for him. But I know I can't be the only one whose parents weren't always as caring or present for us as we could have wanted. For all those people who have had trouble admitting that at times they feel anger towards their parent with dementia, I'm right there with you, and I understand. It's not all love and light, sometimes its about doing something you have a problem with because you know its the right thing to do.

Wednesday, February 23, 2011

Well, we've gotten through the surgery, although not without issues. The surgery itself went well and Dad came through just fine. But am I wrong in how surprised I am at how dementia seems to throw most medical practitioners. Its like they've never run across it before and don't know quite how to fit it in their little procedures and rules.

Every medical person who entered the room where Dad was being prepared for surgery seemed not to know about his dementia, addressing him each time as if he could respond to their questions. They would then turn to me when nothing was forthcoming and I would have to repeat that he had dementia and that I would be answering any questions FOR him. How is it possible that something that is becoming so common is such a mystery to doctors? And I really hate having to say over and over again that Dad has dementia right in front of him! I don't know how much he understands but can't imagine it helps to hear over and over again. Why his overall diagnosis not written clearly on his chart is what I'd like to know.

It left me with the desire to open or help open a clinic staffed only with doctors who understand or have some experience with dementia. Not dementia specialist but regular doctors and surgeons, podiatrists, internal medicine, etc., that know how to deal with those with dementia. I know, I know, its a pipe dream but it seems like a good idea to me. TBC

Thursday, February 17, 2011

Dad had been seated in the exam chair for most of his appointment. The doctor decided he needed an EKG, so he brought in his little cart, grabbed his paper full of recording electrodes, and began sticking them all over Dad's chest. He connected the many leads, one to a sticker, then activated his machine to take a reading. As it turned out, he had to do two, so Dad had to sit there, wired up, for a little bit longer. I could see his hands picking at the stickers, not knowing what they were.

At this point, the doctor told us we were headed to the lab, so Dad's caregiver eased him out of the exam chair and manuvered him over to the waiting wheelchair. It seems that Dad had had enough, however, and he refused to bend his legs and sit down. The caregiver patiently tried over and over, trying to get Dad to grab the chair behind him and sit down, sometimes pushing him gently on the chest. Like a child who becomes completely rigid so he doesn't have to get into his high chair, Dad pulled his own brand of rigidity and rebellion, refusing to sit down. The caregiver and I looked at each other, shrugged, and decided to let Dad walk a ways. I grabbed the wheelchair, the caregiver grabbed Dad and away we went. Eventually, we stopped again, and Dad acquiesced to being in the chair, letting us wheel him away. I couldn't help but applaud him for his refusal to play along. He doesn't have the words anymore to express displeasure and refusal. People make him do things all the time. Using his body, the only means he has left, he made it very clear that he wasn't having it, and it was up to us to listen to his silent language.

Monday, February 14, 2011

Well, we're one more doctor's visit down, which is a good thing. I feel so bad for my poor Father, however. I can tell he's getting utterly sick of being taken to the hospital, poked, prodded, undressed, dressed, and just generally forced to do things he doesn't particularly want to do. I'm beginning to think he actually recognizes the surgical clinic since his face gets a little tense when we get there. He did seem happy to see me when his caregiver rolled him up to where I was sitting. Just about the only benefit of all of this is the fact that we're seeing more of each other, so I think his memory of me is being jogged a little more often.

I caught an expression on his face this afternoon, as the doctor was listening to his heart. It was an expression that I instantly recognized from my childhood. It's a small expression, but I know it so well. A twist of the lips, followed by a tightening of the whole mouth, and a slightly impatient look in the eyes; it's his look when he's a little disgusted with something or he doesn't approve of what's happening. He used to use it on me all the time. I don't blame him in this instance, however. I'd be a little disgusted, too.

At the last minute, the doctor gave us a lab sheet and told us we needed to take Dad to get a blood draw. We had already been in the clinic for an hour and a half(for a 10 minute exam) and were exasperated at having to stay, but we had to do it. As we tried to put Dad back together and get him back in the wheelchair for the trip to the lab, he protested in the only way he had left. TBC

Thursday, February 10, 2011

The surgery for Dad's hernias is rapidly approaching and I'm a little weary. This is one of my first forays into the world of outpatient surgery but already I don't much like what I see. We were able to schedule a day for the surgery, but for some reason known only to themselves, they were unable to tell me the time of the procedure. They will call me the day before and tell me whether its morning or afternoon. I'm hoping it isn't morning as Dad doesn't do that well in the morning, although, considering he won't have eaten since the night before, maybe morning would be better.

Another annoying thing was the need to schedule a pre-anesthesia appointment. I don't know what they are going to do exactly to test his capacity to handle anesthesia but I don't know why they couldn't do it at the first appointment. It just means dragging poor Dad out to yet another appointment, although I think he actually enjoys being out in the car. Either way, lots of appointments.

We've been lucky so far not to have to do all of this medical stuff, due to Dad's amazing health, but I think our luck may be about to run out. I see a year faced with a lot more trips to the doctor, and potentially more surgeries, which doesn't make me happy, nor will Dad enjoy it, I'm sure. More medical decisions to make for Dad, made even harder by the fact that were he lucid, he would choose against them all. I'm thinking my schedule will need to be even more flexible as his immune system continues to wither, and I feel for him, all of this poking and prodding, this humiliating stuff happening to him, all things he would never choose and never want and be embarrassed by. It's hard to watch, as I"m sure many of our community know and understand.

Monday, February 7, 2011

I actually know exactly what it's like to depend on someone else because you're too sick or unable for other reasons to do things for yourself. It's not fun, I totally agree. I've been really sick for a few months at a time and during that time, friends had to drive me around, cook for me, and do other stuff. It was incredibly hard for me to accept that help, but I did. A trusted friend told me, when I was complaining about having to accept this help, that people actually WANT to help, that I can't always be the one to be the helper, and accepting help can be a great gift you give to those who love you.

So believe me when I say, I"m not elderly, but I know what I'm talking about. Adult children have more and more on their plates than ever before. Those adults taking care of their own children AND aging parents are called the "Sandwich Generation" and they are taking on more and more responsibilities so they can work, support and care for their families, and deal with parents who are no longer able to care for themselves. It's time to give them a break and accept help, accept solutions you might not have wanted to accept, and face the hard truth that accepting help from others is not a bad thing and doesn't mean you've failed in your life. It just means you're accepting help for something you can't do anymore, and it's giving your kids a break.

Friday, February 4, 2011

I was just talking to an acquaintance of mine whose 92-year old father is suffering from worsening dementia. He has no more short term memory, has to be reminded what he is doing and who is with him, and is becoming somewhat childlike in demeanor. Apparently, he and my friend's mother still live together in a condo, and the mother, who I assume is also in her nineties is pretty much his sole support. He relies on her almost exclusively, becoming agitated if she leaves the room for very long.While I am sympathetic towards her father's situation, I had more concern for her poor mother, as I have some idea of what it's like having to look after someone like this. I asked my friend whether there was any home help coming in or whether she or her siblings helped out much. She sighed and said that there was a weekly aide and that the siblings tried to help, but that the mother was pretty adamant about taking care of her husband herself, refusing most offers of assistance, and most likely refusing any mention of moving to Assisted Living. She didn't want to be a burden on her family, was her reasoning. And I just thought, not again!My father's situation wasn't identical but it was certainly close enough. He expressed the same fear about being a burden to us, swearing he could take care of himself. What he didn't understand is the same thing my friend's mother and countless other parents in this situation don't understand. You're being a much heavier and more difficult burden by not accepting the help! TBC

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Toll-free LBD Caregiver Link – 800.539.9767

LBD families and caregivers can connect directly on a regional basis, through the LBD Caregiver Link, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:

vListening compassionately and confidentially to the challenges of LBD families and sharing their own personal experience with LBD

vOffering emotional support

vReferring families to additional LBDA programs and services as appropriate for their needs.

While Lewy Buddies are not able to provide medical advice and are not medical professionals, they are typically well informed about LBD through their personal experiences and volunteer training with LBDA. They may also be able to help identify information and community resources concerning the diagnosis and care of a person with Lewy body Dementia.

When calling or emailing the LBD Caregiver Link, you will speak with an experienced caregiver who can provide information on LBD and who can also share their personal experience and compassion.Please leave a message and an LBDA volunteer will return your call within 24-48 hours.

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Compassion. Knowledge. Care. That's what AFA's toll-free hot line delivers. When you reach out to us, licensed social workers and other professionals knowledgeable about Alzheimer's disease and related illnesses will answer your call. They will respond to your questions and direct you to appropriate local resources to meet your needs. No question is too small; no concern is too insignificant.

AFA's toll-free hot line provides information, counseling by licensed social workers and referrals to community resources across the nation.

The hot line operates during regular business hours—Monday through Friday, 9 am to 5 pm (ET). During these hours, social workers are available by phone, as well as via Skype and live chat; to connect via Skype and live chat, click here. At all other times, please leave a message and we will return your call. To ask a question via e-mail, click here. If your situation is an emergency, please dial 911 when appropriate.

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Welcome to Full Life Care – formerly ElderHealth Northwest. Full Life helps adults of all ages with chronic illnesses, physical or developmental disabilities. We are a not-for-profit organization dedicated to improving people’s lives and supporting caregivers. Since the 1970s, we have helped thousands of individuals preserve their dignity and avoid living in a nursing home or in isolation.

This is a great organization. My Dad visited them for years and got a lot of support through their Men's Support Group. I highly recommend them for help and support of your loved one.

*******************************Check out Seattle's Grief center if you or someone you know needs a little extra support during a tough time. http://www.healingcenterseattle.com/ *******************************What is the Helpline?

The Alzheimer's Association's Helpline is a toll-free number that you can call 24-hours a day, 7 days a week to get information about Alzheimer's disease. Through our National office, we have the ability to serve individuals in 140 different languages by accessing translation services.

Call 800.272.3900 to speak with a trained Helpline specialist who will provide emotional support and appropriate referrals to local resources in the 23 counties served by the Association. All calls are confidential.

About Me

I'm a writer, caregiver advocate, hospice/bereavement counselor and care manager for my father, who suffers from Lewy Body Dementia. I think it's important to talk about caregiving from my point of view as a member of Generation X. I also think it's important to spread the word on what Lewy Body dementia is, and how to deal with it effectively.
Some names, dates, details have been altered due to memory discrepancies, to maintain privacy, and to ensure narrative flow.